Special Needs Adults

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These Three…. they are truly amazing. As their parents, my friends and I know this. We know the progress they have all made. Sometimes though in dealing with the day-to-day, we do not always remember the journey until someone who has not seen them in quite a while points it out.

We lived it all but we tend to concentrate on the here and now and the future – how we got here is not always uppermost in our minds. We deal with today.

Last week we ran into our kids’ Special Olympics swimming coach at a Best Buddies Christmas Party. She was there with another friend of ours. She has recently moved out-of-state so she was filling us in on what she has been up to since her move. She was also their volleyball and golf coach for many years as well so she has been a part of our kids’ lives for quite a long time – since they were very young.

As she was watching our kids at the party, she commented on just how much progress they had made over the years. DC’s friends stories are not mine to tell, but her comments about DC made me sit back and really think about just how far he (and his friends) have come. As she watched him socialize in this crowded room she said “Who would have ever thought that he would be able to sit in this room and tolerate the crowd and the noise?” She was right; attending this activity would not have been a pretty sight back then. Never mind the noise, he would have never been so social with anyone of his own age or anyone but me for that matter. Then there were the times when I really should have just thrown in the towel and not taken him to practice at all. Now-a-days we can pretty much go anywhere with out too much of an issue.

She knew us and she knew our kids inside out. She always went out of her way to make the process as easy as possible for us and most importantly, for our kids. Special Olympics lost a fantastic coach, when they lost her due to her work and school commitments.

These Three have been through a lot both separately and together. We have all hit some potholes along the way; some deeper than others, but for the most part we have traveled this road together. It is nice to sit back and remember this very long journey that they have taken with each other. They have grown into amazing young adults and yes, we know this, but it is always nice to have someone point it out and bring it all back for you.

Although the stories of his friends are not mine to tell, I will say that I am as proud of them as I am of him. As we live with new and different struggles and challenges, we should take the time to remember just where we all started and all that These Three have accomplished over the years.

I read a blog post recently which brought back some memories for me. The post, a good but sad read, written by Erik Weiner stayed with me for days (read the article here), as it reminded me of my step uncle’s brother, whom I met only once when I was young.

I am guessing that I was about 9 or 10 years old. One day, out of the blue my parents told my brother and I that we would be going out with our aunt and uncle. We had been sent to their house before for babysitting purposes but never for an “outing”.

They came to pick us up and we were told that we were going to take my uncle’s brother out to lunch. I knew my uncle had a sister. She lived right across the street from him and she and her family were there for every holiday. We were around her often enough to also call her Aunt and her husband, Uncle. Never had I heard any mention of a brother.

We pulled up to a very large building, really rows of buildings. My uncle went inside, while we waited in the car with my aunt. She told us that we could not go in because it wasn’t safe for us to be inside. I got a bit worried at that point.

I was and still am a terrible judge of age, but I am guessing that my aunt and uncle were somewhere in their 40’s. Eventually my uncle came out arm-in-arm with a man who seemed to be about the same age. They put him into the car, in the front seat between them. He was very excited to see us, it seemed, very excited – I was still a little bit afraid.

His name was Freddy. I don’t remember hearing him speak, I don’t think that he could. There were a lot of grunts and noises. He seemed so happy to be out and so happy with the Devil Dogs, his brother brought for him. I remember devil dog remnants being everywhere. My uncle was really good with him, which led me to believe that even though I had never heard mention of him and he was really not spoken about (that I knew of), this visit was not random. He was so good with him and prepared so for everything that I had to believe these visits were quite regular.

My aunt explained that Freddy was mentally challenged – of course back then they used different words, and could not take care of himself. This was why he lived at the “school”.

It did not take me long for my fear to subside and to warm up to him. I’m sure, now feeling comfortable and with my interest piqued, I asked far too many questions. I wanted to know what happened, how he got that way, why he didn’t know how to eat, why he couldn’t or didn’t talk. I don’t remember the exact answer I got to those questions, quite possibly because no answer they could give me would have been good enough of an explanation in my mind. It was probably that he was born that way. This was confusing to me. I wanted to know if he lived there all of his life, why I never heard about him, why he didn’t come to family holidays, but was afraid to ask. I think this may have been my first experience with anyone with special needs.

We took Freddy for a drive and then stopped at A&W Root Beer for lunch. He really enjoyed that. A&W was close to the “school” where he lived so after lunch we drove back to bring him home.

I was glad that I has the opportunity to meet him. I really liked him. I am sorry to say that this was the first and last time that I ever saw him and I never heard him mentioned again. I didn’t feel comfortable asking about him but I always think of him when I see a devil dog or see an A&W Root Beer, or read an article like the one mentioned above and every time the “school” is mentioned. This was not residential housing or a group home, it was at the time, an institution, probably one of the few options available at the time. I believe it is still in operation today, whether or not it is still considered an institution, I do not know.

Now that I am an adult, I understand that this is the way things were handled back then. This is where people like Freddy went to live. I also understand, after working in a convalescent home many years ago and from his reaction to us, that it probably wasn’t dangerous in the true sense of the word for us/children to have gone inside. It was probably more like the seniors at the convalescent home, who would get so excited, overly excited and sometimes frighteningly excited to see young children. I could be wrong about this, I have never been inside but that is the way I explained it to myself.

I am happy that I got over my fear quickly enough to enjoy the day with him. I am sorry that times were as they were and parents were told that this was the only option for Freddy and people like him. I don’t know if Freddy ever lived at home, so I won’t say that this was the case with him, but it was the case with many children back in the day.

I can say that Freddy did seem to be very happy and I developed a new appreciation for my uncle after seeing how kind and loving he was with him. I also imagine that Freddy might be the reason that my uncle always remembered DC on his birthday and holidays.

Like this:

Recently I had the immense privilege and honor to listen to the beautiful and heartbreaking song written in memory of Avonte Oquendo, by his uncle, Rocopera. Even over the telephone, it was apparent that the love he has for this child is immeasurable. The pain of this loss will never be healed.

“This song comes from a broken heart”

His heart IS broken – all of our hearts are broken. What happened to this beautiful child should never have happened. What happened is every parents’ nightmare. Those of us that have children with special needs know this fear all too well. We know that simple things like just putting your child on a school bus and sending him off to school can be terrifying. They are not with us, we are not in control, we are not there to protect and take care of them. As the mother of an adult child with autism, I know this fear. I live this fear. – We all live this fear.

Avonte’s disappearance drove that fear home for all of us. Avonte’s story is not something that happened to one boy or one family in New York – it happened to all of us in the Autism Community. A tragedy like this can happen anywhere – and it does happen everywhere.

“Never Will Forget You – A Tribute to Avonte Oquendo” was written not only as a memorial to the nephew he loved so deeply, but as a vehicle to raise awareness about Autism in general. Rocopera has spent the better part of his adult life advocating for/with the Autism community. His own son is on the Autism Spectrum.

In an effort to work through his pain, Rocopera has been spending much of his time writing and producing “Never Forget You”. He is also tirelessly working on and producing a documentary chronicling the events of that horrific 3 1/2 months. A memorial at the site is in the planning stages, pending the approval of Mayor De Blasio. Rockopera needs to raise awareness, he needs to know that Avonte will never be forgotten.

As it has been said, Avonte, brought an entire city together. His disappearance brought an often, very separated Autism community together. It cast a spotlight on the problem of wandering/elopement of Autistic children and adults. He has raised awareness to the issues that many families face in trying to keep their children safe. Our children should be safe, at all costs…………. Avonte should have been safe in school.

– Avonte Oquendo should be memorialized, in any and every way possible.

“Never Will Forget You – A Tribute to Avonte Oquendo” will be released on iTunes 5 days before the October 4th anniversary of his disappearance, with all of the proceeds to be donated to credible Autism charities.

We will be posting more information about all of these projects in the weeks to come, but in the meantime, please help us spread the word about the release of this beautifully written and performed, tribute to Avonte.

I promise you that once you hear “Never Will Forget You”, you will never forget this haunting and so very moving song……………

Contributed to:

Break the Parenting Mold

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Charity Miles

Liebster

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